COVID-19 Advice

Please do not attend unannounced at any of the hospitals that provide care for patients with congenital heart disease or go directly to your GP practice,  A+E or pharmacy

• If your symptoms get worse and you cannot cope at home then go to NHS 111 online and complete an online assessment

• If you do not have access to the internet, phone 111 directly

• You may be on hold for a long time. Be prepared to wait and keep your phone charged up

• If you need to call 999 please tell them that you think you have symptoms of COVID-19 so they can prepare to pick you up safely
• Explain that you, or your child has an underlying congenital heart problem. Please take a copy of your last clinic letter with you. Our NHS is extremely skilled in looking after sick patients and it will help them to look after your or your child safely if they have this information.  They can call the “on-call” congenital heart team for advice 24/7 via the switchboards listed below:

• Alder Hey Children’s Hospital: 0151 228 4811 (paediatrics)

• Manchester Children’s Hospital: 0161 276 1234 (paediatrics)

• Liverpool Heart and Chest Hospital : 0151 600 1616 (adults)

For Babies and Children:

• Call 111 if you’re worried about a baby or child under 5.
• If your child seems very unwell, is getting worse or you think there’s something seriously wrong, call 999.
• Do not delay getting help if you’re worried. Trust your instincts.

Click here for advice about what to do if you are worried that your child may be very ill

https://www.nhs.uk/conditions/coronavirus-covid-19/symptoms/coronavirus-in-children/

The Royal College of Paediatrics and Child Health has also produced a useful to guide to help parents know when to seek help for their child when they are unwell. Please see the attached poster:

https://www.rcpch.ac.uk/sites/default/files/2020-04/covid19_advice_for_parents_when_child_unwell_or_injured_poster.pdf

The NHS is still able to provide urgent care
Please attend A+E for other emergencies as normal

• For health information and advice, use the NHS website or check your GP surgery website

• For urgent medical help, use the NHS 111 online service. Only call 111 if you’re unable to get help online

• For life-threatening emergencies, call 999 for an ambulance

• If you think that the symptoms may be due to you or your child’s congenital heart problem (they don’t have a temperature or cough) make sure you are clear about this when you are triaged. Ask the A&E staff to liaise with the congenital heart team for advice who are on call 24/7. Particularly if they are considering putting you in with other people who may be ‘breathless’ because of COVID-19

• If you need non-urgent advice regarding you or your child’s congenital heart condition please contact your CHD helpline to speak to one of the Nurse Specialists

Guidance published by the British Congenital Cardiac Association (BCCA) together with Clinical Reference Group (CRG) and NHS England has identified patients with congenital heart disease who may be vulnerable to severe complications from COVID-19. This has recently been updated on 11th June 2020.

As the Government begin to ease restrictions, you are advised to continue to stay at home as much as possible and, if you do go out, to continue to take particular care to minimise contact with others outside your household. You are advised to take extra care in observing social distancing and should work from home where possible. If you have any questions as to how this advice relates to your personal situation please call the CHD helpline to speak to one of the Congenital Heart Nurse Specialists

BCCA guidance: 

http://www.bcca-uk.org/documents/my_files/D1E_BCCA_CRG_-_CHD_and_COVID-19_11_June_2020.pdf

Patients who are vulnerable:

• Single ventricle patients and those with a Fontan circulation

• Infants < 1 year old with unrepaired congenital heart disease requiring surgery or catheter intervention e.g. VSD, AVSD or tetralogy of Fallot

• Those with cyanosis (oxygen staturations <85%)

• Patients with severe heart muscle disease (cardiomyopathy) requiring medication

• Patients with CHD on medication to improve heart function i.e. heart failure

• Patients with pulmonary hypertension (high blood pressure in the lungs)

• Patients with CHD plus other significant co-existing conditions e.g. chronic kidney disease or chronic lung disease

For up to date guidance on staying alert and safe please follow the link below:

https://www.gov.uk/government/publications/staying-alert-and-safe-social-distancing/staying-alert-and-safe-social-distancing

Patients with reduced immunity e.g. patients with Down syndrome, or chromosome 22q11 deletion (Di-George Syndrome) and those taking long-term penicillin to prevent infection because of the lack of a functioning spleen should also follow the recommended guidance around social distancing

Expert doctors in England have identified specific medical conditions that, based on what we know about the virus so far, place someone at greatest risk of severe illness from COVID-19.

Clinically extremely vulnerable people may include the following: Disease severity, history or treatment levels will also affect who is in this group.

• Anyone who has had a solid organ transplant 

• People with specific cancers: 

1. people with cancer who are undergoing active chemotherapy
2. people with lung cancer who are undergoing radical radiotherapy
3. people with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment
4. people having immunotherapy or other continuing antibody treatments for cancer
5. people having other targeted cancer treatments which can affect the immune system, such as protein kinase inhibitors or PARP inhibitors
6. people who have had bone marrow or stem cell transplants in the last 6 months, or who are still taking immunosuppression drugs

• People with severe respiratory conditions including all cystic fibrosis, severe asthma and severe chronic obstructive pulmonary disease (COPD).

• People with rare diseases that significantly increase the risk of infections (such as severe combined immunodeficiency (SCID), homozygous sickle cell).

• People on immunosuppression therapies sufficient to significantly increase risk of infection.

• Women who are pregnant with significant heart disease, congenital or acquired.

The following patients with congenital heart disease are also thought to be clinically extremely vulnerable:

• Patients with severe high blood pressure in their lung arteries and who are taking special medication to treat this

• Patients who have been accepted for organ transplant and are on the active transplant waiting list

If you have been told that you’re clinically extremely vulnerable, you will have received a letter advising you to “shield”.  The government has updated its guidance for people who are shielding taking into account that COVID-19 disease levels have decreased over the last few weeks.

People who are shielding remain vulnerable and should continue to take extra precautions but can now leave their home if they wish, as long as they are able to maintain strict social distancing. There is detailed advice on both the Government and the NHS websites as to how to do this:  

• Only leave your home to spend time outdoors, for example to go for a walk
• Stay at least 2 metres (3 steps) away from other people in your home as much as possible
• Get food and medicine delivered and left outside your door – ask friends and family to help or register to get coronavirus support on GOV.UK if you need it https://www.gov.uk/coronavirus-extremely-vulnerable 
• Prepare a hospital bag, including a list of the medicines you’re taking, in case you need to go into hospital
• Wash your hands with soap and water often – do this for at least 20 seconds
• Make sure anyone who comes into your home washes their hands with soap and water for 20 seconds
• Use hand sanitiser gel if soap and water are not available
• Clean objects and surfaces you touch often (such as door handles, kettles and phones) using your regular cleaning products
• Clean a shared bathroom each time you use it, for example by wiping the surfaces you have touched

The Government is still advising people to “shield” until 30 June 2020 and is regularly monitoring this position.

Detailed advice for those who are shielding from the Government:

https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19

Detailed advice for those who are shielding from the NHS: 

https://www.nhs.uk/conditions/coronavirus-covid-19/people-at-higher-risk/advice-for-people-at-high-risk/

Schools and workplaces have had to work hard to ensure that they are able to implement COVID safe practices. The timetable for return to education and to work is expected to vary across the country. We understand that If you or your child fall into the “Vulnerable” or “extremely vulnerable” category of CHD you will be anxious about what this means for you. The BCCA has given the specific advice below:

Vulnerable patients – at high risk

You should follow medical advice for anyone who is considered clinically vulnerable. Returning to school or work should follow a risk assessment based on the clinical situation as well as the school and workplace’s plans to be able to maintain social distancing and other measures to reduce the potential spread of COVID-19. 

Children, young people and adults who live with someone else who is clinically vulnerable (but not extremely clinically vulnerable) as defined in the guidance can attend school or work. 

The Royal College of Paediatrics and Child Health guidance states that: “Clinically vulnerable children, who are under secondary or specialist care for an underlying health condition are, on the balance of probabilities, more likely to benefit from returning to school when their year group does. These families may need a conversation with their treating teams to balance the potential risks and any familial anxiety.” If you are in doubt about the vulnerability of your child, please call the CHD helplines to discuss these issues with one of our Specialist Nurses

“Clinically Extremely Vulnerable patients – at very high risk”

Children who have been placed into the “clinically extremely vulnerable” category by their cardiac clinical team should not re-attend school at present. Similarly, adult patients in this group should not return to work. People who live in a household with someone who is “extremely clinically vulnerable” and shielding should only attend if stringent social distancing can be adhered to. This includes other children or young people who must be able to understand and follow those instructions.

Public Health England has included pregnant women with ‘significant heart disease’ in the group defined on medical grounds as being extremely vulnerable from COVID-19 and advised that they should also be shielded. The UK Maternal Cardiology Society published updated guidance on 25/03/20 to define what ‘significant’ heart disease is in the setting of pregnancy. This advice is based on a consensus of expert professional opinion in the absence of specific evidence.

If you are pregnant with one of the ‘significant’ heart conditions listed below it is advised that you should be ‘shielding’

• Impaired left heart function (any cause)

• A systemic right ventricle (congenitally corrected TGA, Senning/Mustard surgery for TGA) even if well-functioning

• Hypertrophic cardiomyopathy with abnormal heart function and/or outflow tract obstruction

• Heart disease due to high blood pressure with thickening of the muscle on the left side of the heart

• Fontan circulation

• Pulmonary arterial hypertension (any cause)

• Cyanotic conditions ie saturation in air < 92%

• Moderate or severe valve stenosis (narrowed)

• Severe valve regurgitation (leaking) and moderate if symptomatic

• Symptomatic coronary artery disease

For further information and answers to questions for pregnant ladies please refer to the guidance that has been published by the Royal College of Obstretricians and Gynaecologists. 

https://www.rcog.org.uk/en/guidelines-research-services/guidelines/coronavirus-pregnancy/covid-19-virus-infection-and-pregnancy/

Those patients with Brugada Syndrome or Long QT Syndrome (Type 3) will be at increased risk from COVID-19.  This is because fever can induce dangerous rhythms. There is no evidence that this is any different to the risk caused by other illnesses that result in high temperature. 

There appears to be no increased risk for all other patients with rhythm problems  including:

• Long QT Syndrome
• CPVT
• Patients with congenital heart block 
• Patients with a permanent pacemaker who have a normal heart

If you take special medicine to help reduce the blood pressure in your lung arteries called Macitentan or Bosetan you normally need to have a monthly blood test to check that your liver function is ok

• As long as your liver function has been stable it is quite safe for you to not have your bloods checked for up to three months. This is to help you avoid catching this virus in a busy clinic 

• For specific advice relating to patients with PHT and coronavirus please visit the PAH-UK website

https://www.phauk.org/coronavirus-pulmonary-hypertension/

DO NOT come to out-patient clinic if you or your child have a new cough and/or a temperature or have been in contact with anyone with coronavirus symptoms. Please phone your patient help-line to inform them that you are unable to attend.

All patients due to be seen in an outpatient clinic in the coming weeks are being triaged and cases prioritised by a consultant who specialises in congenital heart disease. This is likely to be the consultant that knows you or your child well. It is now time for hospitals to consider restoring some of the routine clinic activity that was initially delayed or cancelled because of the pandemic. This will enable more complex patients who need an ECG and ECHO to be seen back in clinic. Both paediatric and adult services are continuing to provide urgent clinics each week for patients who are unwell. Although it is important that  clinic activity is restored it is imperative that it is done safely for everyone and therefore the following guidance will apply:

• The number of patients in each clinic will be smaller to enable staff and patients to adhere to strict social distancing

• For those patients who are being  “shielded” staff will do whatever they can to limit the time that you need to be in the department

• You will notice that staff will be wearing personal protective equipment

• You and everyone with you will also be asked to wear a face covering when visiting the hospital from 15th June

• Equipment (ECHO machine) will be fully cleaned inbetween patients.

• Children should attend with only one parent or carer and adult patients should attend alone or if they require support with a maximum of one other adult. 

• Special consideration and adjustments may need to be made if a patient with learning difficulties or special needs require more than one person to support them. Please call your helpline ahead of your appointment if you feel this may be required so we can make appropriate adjustments

• Please call  your Congenital Heart Team via the  patient helpline if you have any concerns.  

Surgery and Intervention

All routine surgical and catheter intervention procedures for congenital heart disease were cancelled across the North West of England in response to the pandemic. Emergency operations and catheter procedures continued to be performed as needed. In the coming weeks plans will be made to cautiously restart doing procedures and operations. The numbers of cases that will be done each week will be reduced due to the need to adhere to social distancing rules etc. Therefore it is anticipated that the back log of patients will continue to exist for some time and waiting times are likely to be longer than normal.

What to Expect: 

It is important that you or your child and the staff looking after you are kept as safe as possible. Therefore there will be new safeguards put in place to minimise the risk from COVID-19 

• You or your child will be pre-admitted prior to your operation or procedure as normal.

• The Congenital Heart Nurse Specailist will give you specififc advice as to what will happen to you or your child and will discuss any special measures that are needed for you

• This may differ slightly between the paediatric and adult hospitals but may include one or more of the following:

• You or your child may need to be swabbed for COVID-19 

• You may be asked to self isolate in the two weeks prior to your operation or procedure

• You may need to be admitted for several days beforehand in order to be re-swabbed and have a CT scan of your chest

DO NOT visit anyone in hospital if you or anyone that you live with have a new cough and/or a high temperature or have been in contact with anyone with coronavirus symptoms 

In order to protect patients, staff and the public, hospitals are introducing new visitng arrangements. Please check these before you try and visit your loved one. The following restrictions apply in the following centres but are subject to change:

Alder Hey Children’s Hospital
Visitors are restricted to a maximum of one close family member or carer each day.

Liverpool Heart and Chest Hospital
From 25th March 2020, all visiting is suspended except for patients who are receiving end-of-life care or patients who need to be accompanied because of special needs.

Manchester Foundation Trust
From 25th March: No visitors will be permitted to any adult wards, other than in defined exceptional circumstances. The needs of patients receiving end of life care and patients living with learning disability, autism or dementia will be reviewed on an individual basis, and where appropriate one named visitor will be permitted at any one time. One named visitor per patient is permitted in the  Children’s Wards.

We understand that this information may cause you to be worried and anxious. Please call your Congenital Heart Team via the patient help line numbers below if you have any questions about how this might affect you or your child’s care.

If you are concerned that you or your child has new symptoms related to your congenital heart problem please contact the Congenital Heart Team on the numbers below to discuss with a Specialist Nurse. We will make sure that patients who need to be reviewed urgently will be seen appropriately throughout the CHD Network during this pandemic.

ACE Inhibitors or angiotensin receptor II antagonists

Many patients with CHD or chronic heart failure may be on ACE inhibitors (e.g. Ramipril, captopril, lisinopril, enalapril), angiotensin receptor II antagonists (e.g. losartan, candesartan)  The British Cardiac Society, British Society for Heart Failure and European Society of Cardiology Council on Hypertension have said that there is no clinical or scientific evidence to suggest that treatment with an ACE inhibitor should be discontinued because of COVID-19. Stopping these medications may cause worsening of your heart condition.

Aspirin

Our recommendation is that patients who are taking aspirin continue on their treatment unless advised differently by their cardiac team.

Use of paracetamol versus ibuprofen

Although there is as yet no firm evidence, patients should use paracetamol rather than ibuprofen or other non-steroidal anti-inflammatory drugs (NSAIDs) to control fever and pain.

Removal of the Thymus

The thymus gland is routinely removed during some forms of cardiac surgery where the scar is at the front of the chest. There is no evidence that this constitutes an additional risk for infection.

Can COVID-19 trigger a Kawasaki like syndrome?

Most children are asymptomatic or exhibit mild symptoms from COVID-19 infection. However, a small number of children have recently been identified who develop a significant systemic inflammatory response. The Royal College of Paediatrics and Child Health have issued a statement stressing that it remains unclear whether paediatric multi-system inflammatory syndrome is caused by COVID-19 and reiterates that it has affected an extremely small number of children in the UK and throughout the world. It remains extremely unlikely that a child will become unwell with COVID-19, and it’s even more unlikely that a child will become unwell with this condition. If you have an unwell child, it probably isn’t anything to do with COVID and is more likely to be something else.

The Royal College of Paediatrics and Child Health has produced a useful to guide to help parents know when to seek help for their child when they are unwell. To view the poster, click here.

Coronavirus (COVID-19): UK Government Response
https://www.gov.uk/government/topical-events/coronavirus-covid-19-uk-government-response

BCCA (British Congenital Cardiac Association)
https://www.bcca-uk.org/pages/news_box.asp?NewsID=19495710

The Children’s Heart Federation
https://www.chfed.org.uk/

The Somerville Foundation
https://thesf.org.uk/help-advice/coronavirus/

MIND (Looking After Your Mental Health and Well-Being)
https://www.mind.org.uk/information-support/coronavirus-and-your-wellbeing/?fbclid=IwAR3hpzrVMUiwXxqvtskEtR832pYvOIruVx4wPSNcknjos9dWewU-PxxnXUc#collapse6a046

Self Isolation Guidance
https://www.nhs.uk/conditions/coronavirus-covid-19/self-isolation-advice/

Get an Isolation Note
https://111.nhs.uk/isolation-note/

The Faculty of Sexual & Reproductive Healthcare: Advice for women seeking contraception, abortion and other sexual and reproductive health care
https://www.fsrh.org/documents/fsrh-guidance-contraceptive-provision-changes-covid-lockdown

Coronavirus (COVID-19): Implementing Protective Measures in Education and Childcare Settings
https://www.gov.uk/government/publications/coronavirus-covid-19-implementing-protective-measures-in-education-and-childcare-settings/coronavirus-covid-19-implementing-protective-measures-in-education-and-childcare-settings

Advice for Families from RCPCH:

PIMS: The COVID-19 Linked Syndrome Affecting Children – Information for Families
https://www.rcpch.ac.uk/resources/pims-covid-19-linked-syndrome-affecting-children-information-families